An Ear-ache and a Funeral

     Starting my day earlier than normal with plans to spend the weekend with family at the funeral of a life that stroke stole.  Mary Samolej was a woman I was blessed to know through marriage, and she fills the role of wise, old sage even in death.  Immediately after my stroke, I was vexed at the celebratory nature with which most people handled the involuntary act of surviving a stroke.  I was like, "People, do you not see me here stuck in this bed because I can't get out of it on my own and even needing assistance to wipe my own hind end?  Do you see that I'm in pain, and every aspect of the life I get to live will be a struggle?  What is so great about surviving a stroke?  I've carried this question with me voicing it only to those closet to my heart and being chastised repeatedly by my husband who got it without the help of a wise, old sage, but Mary as long as I've known her, has listened to my incessant babbling as a young wife and mother with gentle and accurate correction when my immaturity reached a level of personal detriment, and this week, she has taught me that yes, surviving a stroke is something to celebrate because you get to hug one more time, hear just once more, and yes, its worth it to live with excruciatingly frustrating disability to be able to do those things!  Thank you , Mary, for one more lesson!  I will miss you entirely too much to forget it!
    Facing stroke from the flip-side has introduced me to what I'm assuming is survivor's guilt because after making plans all week to head to what we knew would likely end up being a funeral, I walked into a dark room last night with a tight chest and tears streaming down my face only able to utter, I don't want to go." to my husband who was already snuggly tucked into bed.  I had been playing Candy Crush in the living room when anxiety overtook me at the thought of facing Mary's close family members as a stroke survivor when their mother, nana, or sister hadn't been so fortunate.  The weight of, "Why me, not her?" weighed heavily on my soul.  "I'm sorry!  I'm sorry that my life was spared and not yours!" Something tells me that Mary would have some sage advice for this, but I can't help but feel this irrational sorrow over the survival that Mary just taught me to celebrate, so its going to be a great weekend celebrating a beautiful life that even in death taught me to celebrate mine, but I'm even screwing that up by feeling guilty for doing it.  I know, I know, Mary, I'm a frustrating student, but anyway, to make the weekend more enjoyable, I have an earache that I suspected I'd have after soothing my aches in the hot tub last night, and this will be difficult to explain.  You see, when your brain is injured, it no longer sends out the correct messages to you body, but that doesn't stop it from messaging, and in some cases, it carries on sending wrong messages to the affected body parts, which sums up why I traded my cell phone payment in for a hot tub payment last Christmas.  These bad messages result in a muscle cramp chain reaction called spasticity.  Basically, as I understand or feel it, one muscle beginning down by my hip on the left side spasms setting off a painful chain reaction up through the muscle chain to which its connected ending somewhere right below my left ear.  The hot, high velocity jets of the hot tub do miracles for relieving the discomfort when this occurs, so I often lower my body gradually into the hot tub while lining a jet up with the lowest spasming muscle and just lower myself further guiding the muscle chain along the jet as it relaxes, and well, last night, I didn't stop soon enough and lowered my left ear right into the jet's path.  At first, it didn't hurt, but I suspected that the high-powered water would disturb the inner workings of my ear, and I was right, so this weekend its an earache and a funeral, and not just any funeral, at that, one that conjures anxiety and guilt to accompany the typical grief, but I commit to being celebratory on Mary's behalf because she's taught me that I was given a gift in this broken, aching, ridiculous life that I live, and I plan to honor her and this last lesson by living it well!

The Event

Its a lazy Saturday morning in August, and a young family sits together discussing its plans for the day.  The wife is excited about shopping for stools for the new home she and her husband would close on in a few days, so the husband is, no doubt brooding over yet another moving expense while their 23 month old daughter toddles about drooling on things and chasing the cat (Sadly, I really can't remember what Lili was doing, but this is what is most likely based on her typical behaviors at this age.)  The wife having woke up with a headache that she refused to allow ruin her shopping plans attempts to ask her husband to get her some pain medicine.  her request seems clear and succinct to her ears, but her husband only hears, "Blarbity-blarbity-blarb!"  The alarm that went off in the husbands mind upon hearing his wife's garbled speech blared more loudly when he watched her fall out of the chair she'd been sitting in and collapse on the floor and even more loudly as he tried to help her off the ground and found she was dead weight.  The wife's mind was cool as a cucumber, maybe even cooler, as her brain cells suffocated, but she heard her husband speaking to someone on the phone and became distressed at his over reaction and dramatics when she hear the words, " I think Cori is having a stroke!"  The EMTs came, and although the wife thought she got up and walked to the gurney, she later learned that she was lifted onto it while her mind raged against her husband's obvious over reaction.  The EMTs took vitals and administered oxygen on the way to the hospital admonishing patiently, "your brain needs this oxygen," when the wife batted at it in frustration.  The wife was surprised about the frenzy upon her arrival at the hospital and began to think, maybe, there is something wrong with me after all.  She was given a room, test were administered and medical professionals were baffled by inconsistent symptoms and a lack of treatment options.  Murmurs reached the wife's ears conveying that the only known testament wasn't an option because of the suspected onset being greater than three hours prior to arrival.  Even this news did't break through the wife's unnatural calm likely sustained by the death of her brain cells that process fear allowing her greatest stress to be answering the ridiculous "stroke test" questions she was being asked repeatedly, "Can you count backward from 100 by 7?  Can you raise both arms above your head?  Wiggle your toes.  Can you feel this?  Sick out your tongue."  She was admitted to acute care blissfully unaware of the fact that  a hospital full of doctors, medical staff, and millions of dollars of medical technology could do nothing to save her slowly dying brain, and the game plan for the next 24 hours was to monitor her vitals and attempt to keep her alive to face rehab the next day and months and a lifetime of disability.  Unfortunately, her family that waited in the hallways and waiting areas didn't get to enjoy such ignorance.  They knew they were waiting to see if their wife, mother, daughter, sister, in-law, or friend would remain a part of their lives.  The wife wonders today as she shares this story if it seemed audacious or completely surreal to those standing by for a well-equiped medical facility in the 21st century to have no way to approach a young woman having an ischemic stroke other than to monitor her vitals and treat what was left of her in the morning with aggressive rehabilitation therapies.  The wife, 34 today with significant permanent disability, thinks that its totally ridiculous, especially with ever-increasing numbers of youth and young strokes, that no more time and resources have been devoted to stroke prevention and treatment.  The wife's mind is on what is now like a hellish memory as she lives with the outcome, because she received a call informing her a family member was similarly languishing in a different hospital miles away with vitals being monitored and hopes that she might survive the night.  Its time, people, to dedicate however much time and money it takes to preventing this scenario being repeated time after time after time in the future.  This wife can't figure out how to do it or how to get others excited enough about this cause to act, and maybe, its because she's functioning on literally one hemisphere as the entire right side of her brain fell prey to lack of knowledge, research, and breakthroughs in brain science, over 6 years ago, but what's left of her can't believe that its not possible to learn more about the brain if someone spent the time and resources to do it, and that such action could save future generations of young families from enduring such hardship.  Support the National Stroke Association, and after you've done that quit your job, go to medical school, and become the brain scientist who discovers how to stop a stroke in its tracks and repair the damage done before it can be stopped!

New Every Morning: Absorbent Panties

chrI do not want this to become a pity party for the stroke survivor blog, but it is difficult to share the reality of life with stroke and come off any other way, which I hope, will make evident to you the super-natural quality of the joy, peace, and contentment I experience in spite of ridiculously unfortunate disability.  Well, anyway, I skipped a few days, which means I have a lot to share because stroke isn't like me, it doesn't skip a day.  It accosts me every morning with new and familiar challenges and humiliations.

    My quarterly Botox appointment occurred this week.  I loathe, as well as, love when this pops up on my calendar.  I adore my neurologist and enjoy the chats we have while she repeatedly stabs me with an electrified (The electricity causes the muscle the needle enters to contract allowing for greater accuracy because it allows her to visually determine she'd in the correct muscle based on the part of my arm or hand that is moving before she introduces the toxin into my body.) needle that is wiggled and jiggled around until it enters the correct muscle, and the Botox can be introduced to my ever-contracting muscles forcing them into temporary paralysis and providing me with relief that is similar to the wonderful feeling when you finally get to lie down after a Loooong day of work, you know,  that aaaaaah, nothing ever felt so good feeling, and that is why I get pumped up with this stuff every three months even though I know its the #1 contributor to what I refer to as my "pee problem."  Although the description of the procedure for Botox therapy is one that conjures sympathy from most, it actually doesn't hurt any worse than stubbing your toe, although there are moments when it hurts as bad, and in those, I just repeat over and over to myself, "it will be over before I know it," and it always is, and then, I get to drive home the aaaaaaah of my muscles submitting to toxin induced release.
   I had donned my last Depend while getting ready to go to the doctor, so I had to stop at CVS on my way back into town to restock on what denial mixed with coping humor forces me to refer to as absorbent panties because adult diapers or even Depends are not acceptable vocabulary words for a woman in her thirties, so you wear lace or cotton panties while I wear absorbent panties, and I'm more okay with that on an emotional level.  Its still gross, and I hate it, but I can deal with it on that level a little better.  Most often, I leave this humiliating task to my husband who once returned from it with the report that he was amused that the woman in front of him was also purchasing panties, but you guessed it, they weren't absorbent, but pretty, lacy ones, but really, how pretty could they've been?  After all, he was at Wal-mart, but anyway, on this day I was going to get to experience the humiliation personally and on a whole new level.  For some reason leveling up in this area of life is much less exciting than it is on Candy Crush or other games.  First, my sister-in-law was the cashier who had to try not to notice what she was scanning as I struggled inwardly with whether or not to make direct eye contact and risk having to discuss the item I was purchasing, so I look to my right in avoidance to see my father-in-law standing a few feet away from my Depend purchasing self, and I want to die, well, not die, because then, I'd be there on the ground with my huge value pack of Depends when the paramedics and police came, and I could only imagine the headline in the local paper, "Local woman, age 34, dies while purchasing adult diapers at CVS," so I guess, what I really wanted was to disappear, and then, reappear somewhere private where I could die unobserved from humiliation, but instead, I smiled and pretended that there wasn't anything odd about a woman my age purchasing a product that nursing homes buy in bulk, or actually, they probably buy generic because $15 is a lot  o spend on something you hate, but oh well, if it helps me avoid another zoo birthday party incident, its worth every cent!  You know, you're about to hear another pee story, so come with me to the Mesker Park Zoo, not long after I'd been released from outpatient therapy and began Botox, where I was forced to add absorbent pantie to my vocabulary. 
   Not long after my stroke, it was time to consider preschool options for my daughter, and being an educator myself, this wasn't a simple decision.  I wasn't going to send her to a glorified day care, in fact, if I was going to send her away from home, it had to be a place that offered her something better than I could on my own, so I set my heart on the most educationally blissful environment I could find at the Montessori Academy of Evansville even though my medical bills made the steep tuition a tight squeeze.  Although everyone was super nice and inclusive, the price tag drew a crowd that the small town, country girl in me described as snooty, so when Lili received her first birthday invitation, I RSVP'd knowing I'd feel awkward even in the best elastic waste pant and t-shirt combo that my stroke addled wardrobe could offer, but we arrived to the private room at the Mesker Park zoo just in time for me to spend the entire time hiding in a bathroom stall after having realized something new was going crazily wrong with my body.  I sat on the stool, wet pants around my ankles, tears streaming down my face until Tim missed me and sent someone in to get me.  I honestly do not know how I got from the bathroom to the car, but I did not return to the party, which was mostly over allowing us to easily extract Lili from the festivities without drawing attention to ourselves.  The shame and frustration of that moment are preserved in my mind's museum, and needless to say, i broke down and bought my first pack of absorbent panties after that debacle and since have begun using the drug Toviaz that more successfully dries out my mouth than my pants, but it helps a little and every little bit helps in my battle to function somewhat normally as a productive member of society without becoming a total embarrassment to my growing daughter.  I realize its odd that I feel safe writing and posting this content when its such a shame to me.  I'd like to think its my goodwill toward other stroke survivors facing similar obstacles that frees me rather than a suspicion that my writing isn't good enough for anyone to want to read it.

Purpose Statement: Stroke Awareness and Survivor Reality

A 34-year-old woman possessing a blog for which she has not written in over a year should know better than to create another and think she will be disciplined enough to maintain it regularly, but she resides in the deluded reality that this one will be different because she has a greater passion for the topic for which a less exhausted audience, hopefully, exists, but realistically, its unlikely, but oh well, sometimes, reality sucks, and we have to forge on overlooking its limitations in hope of something better, and that's the summation of  my new blog's content.  I'm going to get real honest about my life after stroke in hope of providing a useful resource to the stroke survivor and her caregivers as she attempts to forge past the suckiness of the reality in which she finds herself because it is possible and definitely necessary, but in reality, nearly impossible on one's own. My help and only hope in this journey has been the God of the Bible through Jesus Christ, so yes, I am a Christian, but I do not intend to evangelize you so much as to share with you some insider's wisdom that my faith has allowed me to gather along the way, so maybe, you can garner some of its benefits whether you embrace Christianity or not.  I am not apologetic about my faith, but I am sensitive to the reality that not everyone shares it and, I believe that is each individual's God-given perrogative, so basically, who am I to attempt to overrule what God has set in place by forcing my faith down your throat, but in reality, if you continue reading my writing, you're going to hear about it because its woven firmly into everything that I am and do, so consider yourself forewarned!  Anyway, the reality is that my faith has afforded me this amazing, almost super-natural joy, peace, and contentment despite what should've been a devastating, disabling life event.   My stroke was, in reality, physically and mentally disabling, but the even greater reality is that it can be overcome by one's attitude, now, I admit, I believe that my ability to maintain the attitude I do in the face of my post-stroke reality would be impossible without the presence of Jesus Christ in my life, but I will share the insider's tidbits of wisdom that I've gleaned from him, so you can attempt to achieve the same attitude on your own, but I highly suspect, in reality, you will find it impossible, so I will also provide access to information as to how one might acquire the presence of Jesus Christ her own life, just in case, one might find herself desiring it.  My pessimism concerning one's ability to conjure up this attitude of one's own will is birthed from my knowledge of my own humanity and the assumption that I'm typical, but maybe, I'm just a turd, and you are better than that and can go it alone, but if you can not there is no shame in that reality because, I believe, its the standard condition of all humanity, so anyway, stay-tuned for posts, videos, and hopefully, helpful tidbits on surviving stroke and its residual disabilities.  The reality is that no stroke is truly alike, so my experience may differ from yours in many ways, so I plan to interview other survivors with differing residual disabilities than I possess to accommodate for as many stroke survivors as possible.  My personal experience is mainly physical and emotional disability post-stroke, and this is where it starts to get real as I violate my own right's to privacy as guaranteed by HIPPA, but then again, HIPPA says, as long as its me sharing, its okay.  My stroke was an ischemic MCA(middle cerebral artery-location of clot) that obliterated nearly the entire right hemisphere of my brain, so yes, you're reading the writings of a woman who is, quite literally, out of her right mind!  P.S.   That's my favorite stroke joke, but stay tuned because there's more to come!  Initially, I was totally reliant on a wheel chair for mobility, followed by a hemi-walker, a four-point cane, a single-point, and finally, independent with a major hitch in my giddy-up and occasional use of single point for unknown terrain or long distances.  My completely paralyzed left arm rehabilitated some shoulder and elbow movement, but rehabilitation failed to travel further south in my upper extremity, so I remain a one-armed wonder, although I do manage to use it in some functional endeavors thanks to Botox therapy, which relieves most of the severe nuero-muscular spasticity in my effected arm, so unbelievably, Botox has a use for something other than cosmetic purposes, in fact, Botox was originally utilized to treat neuromuscular anomalies, which most commonly occur as facial tics leading to the discovery that it can also relax unwanted wrinkles, and the rest is history.  Botox, in the quantities it is necessary to inject into my body to produce the desired effects, has one very embarrassing side for a young, in my case,or old recipient effect: urinary incontinence, so to  temporarily and partially (3 months) eliminate one disability, I abandon the typical, pretty, lace panties common to women of my age (34) in favor of the protection of Depends Sillouette's absorbent briefs, just in case, I have an embarrassing Botox-related issue in a public setting, although I also take an oral medication named Toviaz that provides some relief for this unfortunate side effect of Botox, my wonder toxin, but it comes with its own annoying side effect, dry mouth.  I pop it because I'm willing to deal with dry mouth to maintain the same status for my britches, but it more effectively gives me dry mouth than cure my pee problem, and I mean, so dry your tongue starts sticking to your teeth and talking is nearly impossible, dry mouth, and my one good hand is rarely free from carrying a beverage, dry mouth, but even though its a trade off, I still prefer all the help I can get to maintain the illusion of urinary continence!  I also rely on Zoloft, a well-known antidepressant, to stabilize my stroke addled emotions because without it, I would be completely incapable of functioning in society.  Off my Zoloft, thanks to the brain damage I sustained from my stroke, I have PBA(PsuedoBulbar Affect), meaning the psuedobulbar region of my brain, which regulates one's emotions is totally fried.  Obviously, living with stroke renders one a virtual circus performer as she balances all the disabling conditions with there treatments side effects in an attempt  to function successfully in society, but its possible and makes for some interesting and amusing/humiliating stories that I plan to fully disclose in the name of increased stroke awareness